Muscular Dystrophy Canada is often approached by researchers who are looking to raise awareness about their projects. And similarly, people affected by neuromuscular disorders often want to know how they may participate in health-related research. We have developed this listing, as well as a listing of Clinical Trials, to serve the neuromuscular community by facilitating connections and information-sharing.
This information is intended to inform patients and/or family members about current studies that may be of interest. Muscular Dystrophy Canada is not responsible for the oversight or management of the projects listed below.
Please send summary of the project and contact details to firstname.lastname@example.org.
We encourage researchers to share the results of their work with the patient community. We would be pleased to post relevant materials, including executive summaries or final reports.
Examining adults with physical disabilities’ perceptions of athletes with physical disabilities.
School of Kinesiology and Health Studies, Queen’s University.
If you are an adult (over 18 years old) with a physical disability, who reads and understands English, and has access to a computer with audiovisual capabilities and internet access, please consider participating by completing a 15-minute online questionnaire. As a thank you for your participation, you will receive a $5 online gift card to your choice of either Starbucks or Amazon.
Principal Investigator, Dr. Amy Latimer-Cheung
(613)533-6000 ext. 78773
Co-investigator, Celina Shirazipour
(613)533-6000 ext. 78841
The Congenital Muscle Disease International Registry (CMDIR) is recruiting patients to participate in clinical trials for Congenital muscular dystrophy.
The first step for those interested in participating in these studies is to register with the CMDIR.
For more information, please contact Rachel Alvarez, Associate Director, Congenital Muscle Disease International Registry (CMDIR). Phone: (323) 250-2399
Investigators at the University of British Columbia and Sunny Hill Health Centre for Children are conducting a study investigating the feasibility of conducting research measuring the impact of providing a new power wheelchair, on wheelchair driving performance and participation in everyday activities for children and youth with significant mobility limitations. The study is recruiting children (5-17 years) and families in Vancouver/ Lower Mainland, BC, and will involve:
Participate in a study examining measures of scooter use. Researchers from the University of British Columbia are looking for volunteers who:
Muscular Dystrophy Canada is playing a key role in an exciting new patient research initiative called The Christopher Project. We’re working in collaboration with the Marigold Foundation and clinical centers of excellence across North America to survey patients and families about their experiences in living with neuromuscular disease, specifically myotonic dystrophy types DM1 and DM2. The information gathered will be used to increase our shared understanding and address the challenges of living well with this complex disease.
If you or someone you love is affected by myotonic dystrophy, and you would like to participate in this important initiative, please submit your mailing address.
For more information or to fill out the survey online, please visit the Christopher Project website.
Questions? Please contact Marla Spiegel at 1-866-687-2538 ext 1103.
The aim of our study is to explore and understand the perceptions and opinions of patients with rare diseases regarding the value of obtaining a diagnosis. Furthermore, we would like to understand the value of using technologies such as whole-exome sequencing (WES) in providing a clinical diagnosis for patients with rare diseases. It is part of the CARE for RARE project, a pan-Canadian project promoting the use of a new genetic technology for diagnosing rare diseases.
We are looking for input from patients and parents of patients with rare disease in Ottawa, Calgary and Edmonton.For more information email Kathleen Charlebois.